Life after transplant: Every day is a fresh start

ben after his liver transplant

Even though I had surgery to treat a serious liver disease when I was only 9 weeks old, I didn’t really think too much about my liver until about a few years ago, when I was in fifth grade. That was when my mom and dad told me that I would need a transplant. Learning that I needed to be on the waitlist for a new liver was probably the darkest moment of my life at that point — I felt as though the world was collapsing around me.

In January 2016, I went on the transplant waitlist. On September 21, 2017 — which also happened to be my dad’s birthday — I underwent a successful liver transplant with Dr. Heung Bae Kim and Dr. Khashayar Vakili from the Liver Transplant Program at Boston Children’s Hospital. The process of waiting a year and a half for a liver and then getting the transplant taught me many things. I think these are important insights for other families waiting for a transplant, or for any kid going through a tough time.

ben with his parents after transplant

Stay positive.

I’ve learned to see the good in things, even in the face of challenges. Being on a transplant list means that you could get called in for a transplant any day, at any time, and the idea of getting a transplant scared me. But if I had spent every day scared or worried I wouldn’t have been myself, and I wouldn’t have been able to enjoy each day.

In fact, one day when I was in sixth grade, I came home from school and my mom told me that my doctor had called to say that my transplant would happen that night. But they called it off just moments before the operation was supposed to start because the liver wasn’t perfect for me. Even though I was annoyed at the time, I was grateful for all the doctors, nurses and other people who had shown up to support me.

Try to keep things in perspective.

My parents often remind me how lucky I’ve been. I mean, many kids with the same liver disease have been in and out of the hospital many times — not to mention that most of them needed a transplant at a much younger age. I was also very lucky to receive a liver for transplant: There are roughly 17,000 people waiting for one and only about 45 percent of American adults have chosen to be organ donors.

ben with his parents and sister after liver transplant

Value your community.

My liver transplant experience taught me what a strong community really looks like. During my recovery, my school community came together to help me and my family in every way they could. I learned how just a simple card or email of support can go a long way. Speaking of school, my transplant also gave me a new appreciation for everything I was missing. I used to joke that missing school would be a fun thing, but in reality, it wasn’t. Over those six weeks while I was out for my recovery, I not only missed my friends, but also my teachers and the classroom experience.

ben plays soccer after his liver transplant
Playing goalie for my soccer team, six weeks after transplant

Focus on the future.

One of the things that kept me going during my recovery was the goal I had set for myself of being back on the soccer field after six weeks. Before the transplant, Dr. Kim had told me that if all went well, I could resume normal activities after six weeks. This motivated me to take really good care of myself.  When six weeks had passed, everyone was concerned about letting me play. But just as he had promised, Dr. Kim gave the thumbs up. I played goalie in my first game back — and we won!

I’m 14 years old now and choose to look at every day as a fresh start. I’m sure everyone can agree that life has its ups and downs; its good and bad moments. But I’ve realized there are two ways to look at the world. One way to look at it is that there is mainly darkness with only glimmers of light. Another way to look it is that there is lots of light with only glimmers of darkness. This is how I have chosen to live my life, and I like it this way. 

Learn about the Liver Transplant Program and register to become an organ donor.